Thursday, December 24, 2009

Christmas Wish

I was going to name this post, Thought provoking Thursday Post but decided against it at the last minute. Maybe in the future I will have a "Day of the Week" Post but for now, this is my christmas wish. While Keegan was laying on my lap today, grinning and giggling and melting his momma's heart, I had a swell in my throat. Not only for my baby, who turned 3 months old yesterday but for the future. I see him and want so badly for him to have "normal" functioning, I believe deep down in my mommy soul that he will and if not, if we are dealing with some repercussions of SGBS and he ends up having some delay or slowness, that will not change how Ryan or I or even any of his family love him.
You always want what is best for you child, I totally get this concept now.  That being said, while I was watching Keegan today on my lap smiling at the door, I turned to Ry and commented how I would eventually like to give Keegan a brother or a sister (maybe both).  This is really my christmas wish, I dont want Keegan to be alone, I want him to have a sibling to share in the fun of holidays, family get togethers and weeknight dinners. Above all things I want him to have a sibling so he can have a best friend that has a bond stronger than most.  The one thing that worries me and crosses my mind daily is "what if we are told one of us is the carrier for  SGBS" I don't want to knowingly bring another child into this word only to have obstacles placed in their way because "we wanted another child."
I dont know, I know its not in our hands. I also know that I am a worrier. Its in my blood to not only worry about things in my control but to also worry about things that aren't. So this year, my christmas wish is to eventually be able to give Keegan a brother or sister to grow up with. We will be getting genetically tested sooner rather than later so we can know for sure but if there is one thing I want this year for christmas, its not DVDS, jewerly, clothes or even gift cards. It's to know that there is hope that we are not the carries of the gentic mutation and that we can go on to have another healthy baby or two.
I am going to leave you with a sweet story because I have gotten very deep and kind of sad in my last couple of posts and I apologize, its just what I am going through right now. My mom has a friend named Brenda. Brenda is a wonderful lady. She came to my baby shower and asks about baby Keegan anytime mom sees her at work. About two months ago mom stopped by our house on the way home from work with a towel for Keegan that Brenda had picked up from an arts and crafts show. It was a dog towel and we absolutely love it! My mom once again stopped by our house on the way home from work on Monday and dropped off a gift from Brenda. She had made a build a bear for Keegan, it is the cutest, softest dog  I have ever seen! When I took him out of the book and looked at his birth certificate, Brenda had named him Miracle. I got teary eyed. She told mom that before she put the little heart inside the dog she said a prayer and kissed it! That was the sweetest story I have heard in a long time! Here is a picture of the new addition to our family: Miracle.

Merry Christmas Everyone!

Saturday, December 19, 2009

Relief at Last

Monday morning bright and early we had to be back at Midwest Radiologic Imaging for Keegan's CT w/ contrast. I went alone with Keegan to have daddy meet up with us around 9 am.   We got there, signed in and I managed to find a seat where I could unbundle lil dude, and relax until our name was called. A couple of minutes later the receptionist called me up to the desk (as I wondered how the heck I was going to moved ALL my stuff to the front counter then back to my seat-I said to myself screw it, take the kid and come back as quick as you can-if someone wants to  steal something they obviously need it more than me).  I had to take this 7 oz bottle back to my seat and try to feed it to my 2 1/2 month old, I was so worried he wouldn't take or that it would make his sick, all he has ever had EVER was formula.  But to my surprise he took the whole thing!

Ry got there a little while later, after I had been called back to a different sitting area. We were waiting for the NICU nurses to come down and put his IV in for the contrast. When they NICU team finally got there, we were called into the CT room.  I set Keegan's head in this little trap thing and layed his tiny body down.  Immediately the nurse started to attempt to find a vein. She was not having much luck! She finally thought she found one and pricked him once.  When they hooked up a needle to flush the line, we found out very quickly that nope, she was not in the vein. Keegan was screaming at the top of his lungs at this point, he was NOT a happy baby.  She then decided she wanted to try the other hand. She walked around the table with all her stuff and attempted the other side. After 5-10 minutes of searching for a vein, she decided to stab his yet again. I thought this time we would get it for sure, she was almost positive she was in a vein this time. NOPE! This one even started to bleed everywhere. Keegan had just calmed down when, he began screaming again, and really I can't say I blame him.  I mean it's one thing to be IV'd once, but 2 twice with no luck! The nurse kept apologizing and the doctor that oversee's the CT's decided that he was going to have his CT w/o contrast.

I went to sit out in the 2nd waiting area while Ryan stayed in the room with him while he got his CT. It was completly finished in less than 10 minutes and we were on our way out of there. Next came the waiting.

Since we Sara (His nurse practioner at Riley)  wanted me to make my own appointment, they really had no idea when this would be done. This being said, I pretty much knew I wouldnt hear from them on Monday. On Tuesday I had a meeting with First Steps to put our plan for Keegan's PT in place and really didn't expect to hear anything from Riley that morning, but when they didnt call early afternoon, I began getting a little worried. Around 3 our time I decided to call to see if anyone had even taken a look at the scans yet.  I left a message for Dr. Walsh's  nurse to call me with the results. Since this was at 4 pm their time, I knew it probably wouldn't be until Wednesday morning till we heard something.

When my phone rang with the "All I want for christmas" ringtone that is currently assigned to unidentified number, my stomach flip flopped! When I picked up the phone and Jean, Dr. Walsh's nurse was on the other end, I suddenly felt so sick.  What was she about to tell me, should I got in another office so as not to make a blubbering fool out of myself? When she then told me that the scans came back CLEAR, the biggest smile spread over my face. I believe I then asked her if she was sure and then delved into the whole bloodwork question. How can he have NO TUMORS but his blood work shows he does. Then I remembered back to the information that Sara had given me recently.  Sometimes these levels are higher in newborn babies and it really isnt known why. And since when his blood was drawn he was 2 months old but only 1 month adjusted, maybe that was it. But really I decided not to try to rationalize it; medicine is weird. He also had LOTS and LOTS of people praying for him! That had to play a MAJOR role right?

But anyway here we are December 19th currently Free and CLEAR of tumors.  This obviously doesn't mean it will always be the case. That is why we are being followed closely; because that is one of the symptoms os SGBS, tumor in the abdomen. I felt so blessed today to be able to take him to his 3 month photo shoot at JC Penny's and really have the whole tumor issue off my mind. Don't get me wrong I still worry, because that is my nature and because my child is special and does have a genetic syndrome, but I am much more at ease!

I just wanted to THANK everyone for all your prayers and support! I am forever grateful for all of you who have prayed and passed along our story to those you know that can and will pray for our family. You will never know what it means to us! I will soon have a little button you can snag for your blog or profile that says something to the effect to pray for Keegan, my blog designer Jen @ The Blog Cafe is working on it when she gets back in town.

I am gonna post his 3 month pictures when we get the CD on Thursday, there are some really cute shots! I can't wait for everyone to see them! Well, I am off to dinner tonight with some great friends-so that's all for now, never stop praying!


Sunday, December 13, 2009

A Mother's Prayer

Tonight while Ry, Keegan and I begin to rest our heads to sleep, I will pray. I will pray very hard. I will pray with EVERY SINGLE ounce of my soul and this is what I will be praying.
Dear lord, heavenly father please watch over our little family tomorrow. Watch over Keegan as he is injected with chemicals to make the CT work. Watch over him as he gets put through a big scary machine. Watch over him as that machine scans him body for tumors. Dear lord watch over Ryan and I as our tiny baby is put through more tests than most people our age. Please help us to get through the test and subsequent hours of waiting to hear if our little boy has tumors in his small little body. Lord please let the doctors give us good news that there really are no tumors and his levels are just high for an unknown reason. I plead with you that you spare our baby of more tests, surgery, and cancer. I know what doesn't kill you makes you strong but lord he is only 2 and half months old! He has barely begun to live his life. He is such a precious baby that is loved by not just his mommy and daddy dearly but by aunts, uncles, grandparents, cousins and LOTS of friends near and far! Please listen to this prayer and others just like it for Baby Keegan tonight as we want the best possiable outcome from all of this. It is in your name that I pray.


Tuesday, December 8, 2009

You Take the Good....

Well most people finish that sentence with ....the bad. But today I feel like we got more good news than bad, so I am taking the good and leaving the bad for another day, heck another year! First Steps came to the house today to evaluate Keegan for the possiability of early intervention (therapy; wether it be Physical or Occupational). All in all I was very pleased with the result.

The ladies that came to evaluate him tested him in 6 areas. They compared him to his adjusted age of 1 month versus his actual age of  2 months 2 weeks. They do this simply because he was 6 weeks premature.  He did really well in most areas; he has started to track faces and toys, he has started to coo and he will look at your face while you are holding him. They are a little more concerned about some of his gross motor development.  He tends to move his right side a little more than the left and he tends to look to the left more so the right side of his neck seems a little more tight. So the ladies went ahead and recommended that he receive therapy from either a PT or OT, my choosing.  The ladies want to make sure that if we are facing any sort of delay  associated with SGBS that we stay on top of it because he will having a better chance at normalcy (although who or what is normal-what has made us define normal? That is a different blog for a different day!).  So I am very excited about being proactive! All I have ever wanted and will continue to want is the best for him-like every single mom out there!

I also go a call from Sara up at Riley today. The minute I heard that ring tone my stomach dropped like on a roller coaster! I had every thought rushing through my head at once. She called to let me know that the Gastro doctor would like us to get a CT of his Chest, Belly and Pelvis with contrast. We also briefly discussed the peditrician issue. Dr. Walsh has recommended Dr. Crecelius, he did his fellowship up at Riley. I hung up from that conversation feeling decent, not really negative, not really positive just so so. A couple of minutes later Sara called me back she scheuled our CT for Wednesday the 9th and said I could call and reschedule if that didnt work out because she had to go ahead and make an appointment to get me in the computer. I then also asked her about the CT of the head that was taken last week. She let me know that there is still blood on this brain, sometimes it takes awhile to be reabsorbed but there was no more fluid on the brain and that is what she was most worried about. 

I also shared and interesting revelation that my dad had shared with me over the weekend. One of my grandfather's brothers was born with an abnormally large head and he actually had webbed fingers and toes. I had never known this and it intregues me! I need to call them and start asking some more questions. Everyone it seems like is trying to help us put the puzzle pieces together. They are thinking back to relatives and things that have happened in their own lives to try to make sense of the fact that this could be something passed from generation to generation.

Speaking of genetics, I asked Sara about Ryan and I getting tested to see if we are the carriers of SGBS.  She said because Keegan is a patient of Dr. Walsh's and Dr Walsh is a genetisist that he will most likely test us when we are ready (I am scared at what they are going to find to be quite honest!). We are getting tested sooner than later so that we can be sure that if we have another child that we will/will not pass this on.

I really appreciate all the thoughts and prayers everyone is sending our way! We can feel it and can only hope it is helping our cause! And here is an updated picture of our precious angel!

Sunday, December 6, 2009

When is it our turn?

We have no right to ask when sorrow comes, "Why did this happen to me?" unless we ask the same question for every moment of happiness that comes our way. ~Author Unknown

We have always kind of known there was something different about Keegan, from the moment I first saw him in the NICU I knew he didnt "look" like other babies. I think we tried to tell ourselves that it was just a bunch of little "coincidences" that all happened to him, but as the weeks have drawn on we have come to the realization that is not so.  Let me skip back in time for just a moment:

October 9, 2009 we headed north to Riley's Childrens Hospital in Indianapolis. We thought we were just going for a follow up for a few minor things he had when he was born: larger than normal head and weight, in uterine stroke, and multiple digits. All of our tests and reports had been forward to the Neurogenetic Clinic. When we got there we spoke with a neurogenetic counselor for awhile. She asked us all sorts of questions about our prenancy, our famiy histories and about this precious 2 and half week old that we were just begining to form a relationship with. He had only been out of the NICU 3 days when all this started to happen.  After Abby, our counselour was done, Dr. Walsh came in a did a physical evlauation of Keegan. We really had no idea what he was doing and quite frankly we were scared as hell!  All the while, Dr. Walsh started to talk about a genetic syndrome called Simpson-Golobi-Behmel. He has a few of the more prominent markers for it including a larger than normal head circumfrence, he was larger than normal (especially for a premie) at birth, his eyes are a little wider spaced than most babies, and his nose bridge is flatter than normal.  Dr. Walsh explained to us that he suspected Keegan of having this overgrowth syndrome and that there really wasn't a test for it.  We left there feeling more empowered than we had thus far, the NICU doctors really didn't help us a whole lot, they performed every test under the sun but we never really got concrete answers.

Fast Forward 6 weeks. On Monda November 23rd, 2009 we had a follow up appointment in Dr. Walsh's office up a Riley.  We were seen by a Nurse Practioner named Sara. She asked us some of the same questions asked last time, more questions about his developement-what he was able to do and what he wasnt, and about his general well being. She did some tests on his ablitiy to hold up his own head and took a look as his naked, and might I add cold, little body. She was worried about the lag with his head when pulled from a laying down position. She suggested we call First Steps of Indiana down in Vanderburgh County when we got home. She was also worried about the vary large soft spot that was still open in the back of his head and a hernia that has developed around his belly button, both of which will need surgery if they don't clear up. She wanted a follow up CT of his head and an ulstrasound of his belly done when we got home. After the appointment she sent us down to the lab to have his blood drawn, at the time we had no clue what they were drawing his blood for.

We got home that evening and felt pretty good about our trip. Nothing that can't be handled. I called First Steps of Indiana the next day and scheduled a meeting for Wednesday December 2nd for an intial consultation. The rest of the week flew by pretty fast. Some of my family and some of Ryan's family came in town for Thanksgiving and we had the meal for around 20 people at our little 1200 sq foot home! It was a blast though and Keegan got to meet some of his Great Aunts and Uncles and his Great Nana.

The first week of December started pretty uneventful. Keegan went to Amanda, hosue for the first time and got to know Ella and Jamison, her two little ones. By Wednesday I was ready for the weekend. I left work around 10:45 am to head to the First Steps office. When I got in my car I checked my phone for missed calls. Sure enough I had missed one and had a voicemail waiting for me.  After listening to the message, I placed a call to Riley right away to talk to Sara, our nurse practioner.  She had gotten his blood results back. It turns out Keegan as measuring in a critical area for the AFP test (a test for tumors).  She asked me when our CT and ultrasound were scheduled. I let her know it was scheduled for first thing on Friday. She said she would do her best to obtain those results quickly and let us know what they said. She proceeded to tell me not to be too alarmed although she probably would be if she was me.  I replied, "yea I am kind of freaking out!" - Which by the way I was! 

The First Steps meeting went very well. She gathered information about our little family and the obstables facing Keegan. She then shared her own personal story with me about her two boys that were born with genetic syndrome. Although it didn't keep me from being scared sh!tless, it did help me realize that even though this a mere bump in the road, we will get through this. 

After the meeting I phoned Ryan at work and shared the bad news with him. He got just as upset as I was but assured me that everything would be okay. I then called my mom, dad and sister in law Toni.  Everyone shared their sorrow and told me to keep my head up, we have not had our CT yet.  I got back to the office and no sooner did I get in the door than I started bawling again and ran to Laura (my bff in the entire world) and began to cry harder. Why did my little man have to go through this? What did we do that should have been done differenlty? It is still hard for me to wrap my head around......

The next 2 days are a complete blur. I didnt eat much and really didnt smile much. It is hard enough to raise a child in today's society but I was and am completely scared of raising a special needs child. On Friday morning December 4th we loaded our little starving man in the car and drove to Midwest Radiologic Imaging. We waited for what seems like hours, although with a screaming and very hungry 2 month old it would have felt like forever regardless of where we were. He had his CT done first and Ry got to stay in the room with him. Ryan said he fell asleep in the little holder.  We then went across the building to where they perform the ultrasounds.  It was then another 30 minute wait. When we finally got called back to the room we were very anxious. I was scared to death a tumor would just pop right up on ultrasound and we would be admited to the hospital right away. But that is not how it happened. Ry help Keegans arms and keep his Glow worm glowing and singing the lullabies while I rubbed his little legs and feet to keep him calm.  He did very well and the tech was able to get all the measurments and things she needed. I did have to tell her about the 2nd gallbladder that he was diagnosed with in Utero and she commented that she didnt see it.

The next couple of hours seemed to drag. I knew Sara would be calling that afternoon so I was just waiting to here "All I want for Chrimstas is you" by Mariah Carey, its my current Unidentifed caller ringtone :) Around 1-1:30 she finally called. She said they didn't see any tumors and that she was going to take it over to gastrointerology to have them take a closer look and that it would either be late Friday or Monday before she got back to me. We did have a brief discussion about how her and Dr. Walsh are pretty confident we are dealing with Simpson-Golobi-Behmel and that we should find a good Peditirian. Although I had been thinking htis in my mind, her confirming the SGB made it more real.

So here I am on Sunday December 6th holding my breath and praying for whatever reason that the markers for his tumors are just an error. Hopefully she will call me Monday morning and let us know the next step, I think we are both more okay with this now, we have given it a chance to sink in. We have a great family to turn to for support and I am reaching out to others who have special needs children or those that have children diagnosed with SGBS. There is a little boy in Texas by the name of Jackson whom has SGBS. Since it is such a rare syndrome I am not finding a lot of support groups or people to befriend. I have faith though that we will get through this and although I ask my self  "when is it our turn to have something good happen?" I know that Keegan is that something good, he was sent to us for a reason and we will always love him!

Friday, December 4, 2009

Starting over....

With the recent revelations about Keegan's health, I am taking the opportunity to restart the blogging process about the things we are going through as a family and Keegan's health issues! Follow us, this should be an intresting ride!